New to the family - and very scared

[Kathy M]

I just wanted to say hello to everyone who has responded to my daughter's posts lately about my recent discovery. Kristin has found this wonderful group of people and has been encouraging me so much with your stories, suggestions, and support.  I am pursuing 2 different facilities for consults on next steps - University of Cincinnati and Ohio State University.  Both have been very responsive and I'm hoping that once I meet with them, I will feel a bit better moving forward.  Right now, even though the rational side of me knows that this is treatable, I am dwelling on the potential losses and am very sad. 

[sgerrard]

Hi Kathy,

Welcome to the forum. We sort of feel like we already know you, thanks to Kristin. You should be proud of her.

Both U. of Cincinnati and OSU have good reputations, so I think you will be in good hands. I know it is overwhelming at first, but I am glad you are on the forum now. Whatever you may be going through, there will be someone - usually several people - who have been through it or are going through it now. Misery loves company. Actually, we aren't that miserable, good company has a way of changing that.

You are going to do fine, and go on to live a happy life. You'll see.

Steve

[leapyrtwins]

Hi, Kathy, I'm glad that Kristin encouraged you to join us.

When you're diagnosed with an AN it's normal to feel a gamut of emotions - everything from scared and nervous to sad and depressed.  I found that the emotions sometimes came in waves too.   

I think it's only natural to worry about potential losses and even mourn them.  The reality is that your AN could potentially change your life; in fact in some ways it probably already has.  That's not necessarily a bad thing though and the changes generally won't be earth-shattering.

As you read the posts on this forum you'll notice that lots of us talk about a "new normal" and at some point in time you'll have a new normal also.  My new normal means that I am SSD (single sided deaf) and while I was depressed about it initially I discovered that a BAHA was a great solution for me and I haven't looked back.

The good news is that there is life after an AN and life is good 

You might find that it helps you deal with your emotions by asking questions here, or getting opinions, or just venting.  All these things are acceptable, so let us help alleviate your fears or sadness in anyway we can.

Thanks for joining us,

Jan 

[texsooner]

Welcome Kathy. A few days ago, Kristin sent me a PM with some questions since you and I are about the same age(very young I might add!!), and also you have a similar size AN that I had. I responded to her on all the questions.....I hope you got this and it was useful.

Feel free to ask any other questions thru this forum or contact me via PM or email.

Patrick

[lori67]

Hi Kathy!  Glad you made it!

Lots of good advice given already, so I don't think I have much to add to it except for WELCOME to the family!  You'll get lots of support and understanding here - and hopefully a laugh or two (what's family for?). 

Hopefully your upcoming consults will make you feel a little less stressed out.  When you find the right doctor for you, you'll probably feel at peace with the whole thing, like many of us did.

You have a very sweet and kind daughter.  I know she'll be a big help to you through this.

Lori

[Tisha]

Kathy,

When I first found out about my AN on 10/23, I spent 5 days crying off and on.  I was overwhelmed and grieving the loss of my normal hearing and so scared of the future, more loss of hearing, possible paralysis.  I would get up in the middle of the night, go downstairs and ball my eyes out in solitude.  I was experiencing anxiety attacks and couldn't eat.  I felt myself slipping into a depression.  I just couldn't believe this was happening to me.  I found this wonderful site almost immediately and everyone here has been a touchstone for me in all sorts of ways.  Some people are my "big brothers", some are cheerleaders, some calm me down, some are analytical which is great and some are mothers to me (even though I'm 49!)  After about a week after finding out I calmed down quite a bit, even more so after 2 weeks.

It's OK to be taken aback...I still am from time to time.  I'm researching like crazy.  The risks of losing my hearing bring me to tears still.  I"m heavily leaning toward FSR with Dr. Chang at Stanford, but haven't made the leap quite yet.

I prayed a lot that first week.  But my prayers weren't necessarily for making this go away, they were for strength and calmness in getting thru it.  I wanted to not be depressed and full of anxiety.  Within days I got "myself" back.  I believe God answers our prayers in abundance when we ask for those kinds of things. 

You have a lot of research to do, I still do too.  Make copies of you MRI and send them to some places that you see here and on your own research that you would like to talk to.

Big hug from a fellow newbie.  Tisha

[Captain Deb]

Hi Kathy and welcome to the forum,

Please know that there are quite a few folks here that have had very positive outcomes with 3 cm+ tumors.  If you are especially concerned about your facial nerve you might talk to your docs about debulking followed by radiation which was a procedure that was discussed at the ANA symposium in July by Dr Weit I believe. They go in there and hollow out the tumor and then zap it a few weeks later--this is a procedure that Jim Scott had and he's doing remarkably well today. Your tumor may be small enough that they can go in there and get the whole thing out without impacting the nerve to much. I'm sure you've heard of House Ear institute in Los Angeles by now and of the incredible work they do out there and of the free consults they do.

This forum is a wealth of information and personal experience and we are so glad to have you as a new family member.

Big hugs!

Capt Deb

[Sue Vogel]

Kathy, I'm so glad you have joined us.  I was looking for Krstin's post and wanted to tell her how proud it is for a Mom to have a daughter like her.  My oldest daughter (33) has really become a best friend since my diagnosis and surgery.  She made my recovery her priority and worked around her own family to be by my side.  She is truly an angel.  Kristin sounds just like her.

We can all empathize with your fears and concerns.  Don't overwhelm yourself with the things that can go wrong (the odds are that they won't) but rather focus on all the good things you have going for you and think positive thoughts.  Already you have great family support and reliable medical teams.  Become educated about your choices and procedures so that you know the questions to ask.  I know that I practiced being positive and optimistic for others before surgery (and then had my breakdowns privately.)  It helped me to develop a network of people who believed in my ability to overcome this obstacle.  Now those people are there for me as I recuperate.  Prayer chains were a huge comfort to me,also.  You are not in this alone, and it is clear that many, many people have been where you are going.  The time will go quickly, and before you know it you will be on the other side helping others like yourself.  Bless you. 
SUE 

[kdmayb07]

love you mamasita =) just wanted to let you know that i'm thinking of you!

your bff,
kristin 

[LisaP]

Hi and welcome

It is ok to be scared,  I too have gone through many feelings.  I am a newbie and still looking and exploring options.  My next MRI is in jan of 09.  Please keep us up dated and ask lots of questions.

LisaP

[wendysig]

Hi Kathy and welcome,
Since everyone before me has given you so much wonderful information I don' have much to add.  Everyone feels overwhelmed when they are diagnosed with an AN but it is NOT the end of the world.   I have come to think of the people here as a kind of second family, so feel free to vent, cry, laugh, ask  questions    We all understand the emotional rollercoaster you are riding right now and we are here to support you in whatever ways we can.

Best wishes,
Wendy

[Jill]

I was diagnosed on 10-2-08 and have been to both OSU and UC.  Both facilities were very good and gave me lots of good information.  No decision has been made yet.  I think I will feel better about things when I know what the plan is.

[lori67]

Welcome to the family to you too, Jill.

I'm sure you will feel much better once you make a decision which treatment is right for you.

Keep us posted!

Lori

[Jill]

The MRI report says my tumor is 19 mm.  My main problem is balance and some facial numbness.  My hearing is great.  I go back to the doctors on December 9 for more testing and most probably set a surgery date. I had a previous MRI in 8/2007 and the tumor was missed so this has been here for awhile and my balance is most certainly getting worse.  I am 47 years old and in good health.  If the doctors recommend surgery I will trust their opinion and skill although  I am terrified of the possibility of headaches for life after surgery.

[Cheryl R]

Jill, do you have a tendency to have headaches alot?       Do you have migraines or been having headaches since having the AN symptoms.  Your usual headache pattern may make a difference.      Not everyone ends with headaches.     I can't give you a percentage but my own guess is maybe a third or less.      25% or even 10%.   I am not sure.      I have come across several ANers who are not on this forum since I have been thru this for 7 yrs now and know none except the few who are here as they are looking for help.      Many come thru here, do well and leave.           I have NF2 and now have had 4 surgeries and have never had headaches.    There is some post op achiness as part of the recovery which for me,pain pills took care of.                Part of it depends on your tumor size and location, the type of surgery and how well experienced your surgeon is with ANs.              It is best to go to one who has done over 100.                          We never can make any guarantees about anything in what it may be like post op.   Everyone does vary.
I wish you well and hope there is no headache problem for you!                Cheryl R